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Kelly, Narrator: A new diagnosis can make you feel alone. Outside of just processing the change to your life, understanding everything that goes into your treatment can feel overwhelming.

Amgen By Your Side is a patient support program designed specifically for someone prescribed a Amgen medication. Our dedicated team is your partner, committed to providing non-medical, personalized support so you can start and continue treatment as your doctor recommends.

Once you are prescribed a Amgen medication, you will work with your doctor to be enrolled into Amgen By Your Side and get matched with a Patient Access Liaison, or PAL. Or in some cases, a clinical nurse educator – a CNE.

Lindsey (PAL) talking to Khash: … I’m available to help you as you need for anything that might come up. I’m basically your advocate, your cheerleader, your friend. I’m here to support you through the entire journey.

Khash: My primary care physician said, “We’re going to have a Patient Access Liaison get in contact with you to discuss it further with you, and tell you all the pluses, minuses and all that stuff. Lindsey, really took the time to explain it all to me, including the commitment it’s going to take on my side to get this done.

Kelly, Narrator: A PAL is your partner to support and champion you while accomplishing your treatment goals. Some of the ways your PAL can support you include:
- Learning about insurance coverage and the approval process
- Understanding potential costs or cost assistance options
- Sharing additional resources, connect to advocacy groups, or connect with others if interested

Roxie: I did work with the Patient Access Liaison, more commonly known as PALs, and she kept in touch with me. I was really worried about insurance and about out-of-pocket cost. Although I was willing to do whatever it took. She checked out my insurances and I am so blessed because it was 100% covered.

Randi: They assigned me a Patient Access Liaison after I was approved for treatment and just helped guide me through the process as far as what to expect, the process that I was going to go through and just to be there for general support for me.

Melanie: She really took the time to explain everything and go through it and has been there for me for every single question ever since.

Kelly, Narrator: With everything you and your caregivers have going on, it can be difficult to fit treatment into your routine. Your PAL can help you understand what to expect at the start of treatment, how treatment can fit into your routine and send reminders to help you stay on track.

Carol (PAL): I want them to understand that I will be a point person for them. First and foremost, I’m there to listen and also let them know I’m there to support them through the process. And ultimately to empower them.

Latoya: They remind you of things that you typically forget. Even like when it comes to testing kits, you know. I was able to work out a plan. The PAL also will also make sure, like when it’s time to renew insurance, that at the end of the year you know, they shoot you a text messages to call. So I think they’re a great resource. They really are.

Melanie: They call me to do refills earlier than I need them so that I don’t run out of the medication.

Carol (PAL): We don’t want patients to feel that they’re just out there alone and floating in the space of the unknown. They can reach out to us at any time. We’re always available to them.

Kelly, Narrator: The Amgen By Your Side team can also help you become more comfortable with your diagnosis, even visiting to teach you hands-on how to take your medication and help you find medicine in case of an emergency.

Jerry (CNE): As a Clinical Nurse Educator my responsibility and my job is to make sure that our patients are well taken care of and that their needs are met. We also have communication with their primary doctors to make sure that they know and they are up-to-date in their treatment.

Shannon (CNE): I teach them about lifestyle modifications needed to stay healthy, a lot of disease state education.

Kelly, Narrator: We can also help connect you with a peer mentor, who are other Amgen patients that are going through a similar experience.

Randi: I may talk to three or four newly diagnosed patients a week. They want to know what the experience was like for me.

Kelly, Narrator: Amgen By Your Side also has many other resources available to patients and caregivers through our website, AmgenByYourSide.com. There you’ll find information about enrollment, treatment cost assistance options, treatment planning, and many other resources to assist you during your treatment experience.

In the end, Amgen By Your Side is designed to be just that …. by your side.

Melanie: I was so happy because I was so scared. She was there from the very beginning, I am trying to manage this disease by myself, but I’m not really by myself because I have these people in my corner that are available to me at any time.

Roxanne: After being so dismissed and feeling like I was doing this by myself, it was so helpful to have somebody who understood, who knew it. It gave me hope and it let me know that at some point, I was going to be able to go on with my life and not be held back by this anymore.

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Narrator: If you’ve recently been prescribed a Amgen medicine, there are a few steps to the insurance approval process. This will look slightly different for each patient and the time it may take to get approval can vary.

Narrator: Fortunately, Amgen By Your Side, a patient support program designed specifically for you, will be there “by your side” every step of the way, to make the process as smooth as possible.


Narrator: When your health plan decides whether to cover a Amgen medication, their review process may include several steps.

Narrator: First – a benefits investigation. After your doctor prescribes your medicine and you provide permission through a patient consent form, a Amgen By Your Side team member will contact your health plan to review your coverage.


Your Patient Access Liaison, or PAL, or, in some cases, a Clinical Nurse Educator, a CNE will call you with information on the progress of your benefits investigation and review:

Whether the medicine is covered by your policy and prior authorization requirements.

Your estimated out-of-pocket costs and financial assistance that may be available to you

Narrator: Second – Prior Authorization or “PA”. While often needed, sometimes a “PA” may not be required. If a Prior Authorization IS required for you, this is a process your doctor must complete, describing the reasons you should be prescribed the medicine and why the costs should be covered.


Narrator: Third – Health Plan Decision – After receiving all required information, your health plan will determine whether it will cover your Amgen medicine. You and your doctor’s office should receive a written decision from the health plan.

If your health plan denies coverage, you can work with your doctor’s office to appeal this decision. The Amgen By Your Side Team can educate you and your doctor about the process

Narrator: Throughout the process, the Amgen By Your Side team will provide support by:

  • Contacting your health plan to review your insurance coverage
  • Providing your doctor with education on any requirements or PA decisions
  • Going over alternative options you may use to access your medicine while the insurance review is underway
  • Staying in touch with you throughout the process to keep you up to date on the status of the review.


Narrator: For more information on the insurance approval process and the services available to patients and healthcare providers from Amgen By Your Side, visit Amgenbyyourside.com

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Today, we will be talking about science-based ways you can take charge of your health...

Specifically, how you can better understand and use the information you received to improve your health and well-being.

These helpful tools will help you better understand what your healthcare team is telling and asking you, help you ask the important questions to get the answers you need, and discover tips for speaking confidently with your healthcare team so you feel better about your interactions with them.

Why is this important?

Well, have you ever been confused by a medical term?

Have you ever been in a situation in which you thought you understood something your doctor explained, but then later realized you didn't understand it?

Understanding and using information, particularly health information, can be difficult.

In the most basic way of looking at it, communication is challenging. In our everyday lives, we often think "communication" occurs just by talking but sometimes people don't hear us, understand us, or even know what we mean.

There is often an illusion that you communicated clearly. Doctors and other people who are part of your care team are no different!

This can be especially true in a medical setting where doctors and other members of your healthcare team have limited time. They are doing their best to share important information, but sometimes they are rushed, use words that don’t make sense, or are too technical.

Sometimes we think we get it, but then we forget by the time we get home or remember it incorrectly. A.R.T. is a helpful way to remember three science-based ways to understand and act on the information your doctor gives you.

We will start with the “A” in A.R.T.—ASK.

Being curious can help you become a healthier patient.

Asking questions is key to good communication with your doctor. If you don't ask questions, they may assume you already know the answer or that you don't want more information.

Don't wait for the doctor to raise a specific question or subject; they may not know it's important to you.

Sometimes, it can be confusing to think of the right time to ask questions. But, the best time is ALL the time.

“Ask Me 3” is a new patient education program designed to help communication between healthcare teams and patients

Ask Me 3 encourages you to understand the answers to 3 questions:

  • What is my main problem?
  • What do I need to do? And...
  • Why is it important for me to do this?

Feel free to ask these three simple but important questions whenever you meet with your doctors, nurses, and their staff.

Now, a great question is... “What if I ask, but still don’t understand? Let your healthcare team know if you still don’t understand what you need.

You might say, “This is new to me. Will you please explain that to me one more time?” Don’t feel rushed or embarrassed if you don’t understand something. Ask your healthcare provider again.

Repeating is an opportunity for you to give your own understanding of what the healthcare team has explained to you or shown you. This could be applied to many things:

  • a pharmacist telling you how to split a pill
  • a physical therapist showing you how to wear a brace
  • a doctor showing you how to monitor your blood sugar
  • and other things that are told or shown to you that may be helpful to repeat

When repeating or showing back, there are a few things to remember: Use your own words rather than simply holding the doctor or nurse’s words in your memory and racing to say the exact same thing. Take a moment to think about it and then say it in the words that you would use if you were explaining it to a friend or family member.

Repeat back the actions and activities you are being asked to do. Show the steps your healthcare team went through and ask questions along the way if something doesn't make sense.

Think about the type of learner you are—if you like seeing things versus hearing things, that might make a difference in how you want the information shared with you.

Many of us hold back when we talk to our doctors or nurses; we think of our healthcare team as experts, which can make it harder to have a two-way conversation with them. Sometimes, we don’t know what information to share. You may feel pressured if your healthcare team seems rushed or if you feel they are not listening to you.

Let’s discuss the differences between passive, assertive/confident, and aggressive communication styles.

Passive people are often afraid to speak up, speak softly, give in to others, and usually fail to express their feelings or needs. A passive communication style might sound like “It really doesn’t matter that much” or “Okay, that’s fine.”

Aggressive people might disrespect the other person and deny them the chance to express their opinions. An aggressive communication style might sound like “I’m right, and you’re wrong.”

Assertive people express their wishes, questions, and needs in a clear and direct way so that other people—like your doctor—are able to understand what it is they want and need.

Assertiveness is not the same as aggression. Assertiveness is about self-respect and expressing your opinions, whereas aggression is about disrespecting the other person and denying them the chance to express their opinions.

Assertive communication involves eye contact that demonstrates interest, a speaking voice at a level tone and knowing how, when, where, and what you choose to say.

“I” statements offer a way for you to let your healthcare team know if you feel rushed, confused, or threatened. It is important for the healthcare team to know how you’re feeling.

The following are all examples of assertive “I” statement messages:

  • “I need to ask some questions.”
  • “I feel confused.”
  • “I prepared for this appointment and want to show you some of the changes I’ve tracked.”

You can build on this using the formula of “I feel _____ when ____ because ____,” as a way of expressing how you feel, speaking up when you feel that way, and why you feel that way.

Here are two examples:

“I feel frustrated when I ask a question on the portal and don’t get a reply because I am not sure whether I am supposed to take my next dose.”

“I feel really happy when you take the time to answer my questions because I leave feeling clear on what I’m supposed to do.”

It’s okay for you to ask questions and tell your healthcare team what you want like... if you want your doctor or nurse to speak slower, clearer, louder, or to use plain language.

The important truth is... taking charge of your health is an A.R.T. It doesn’t have to be complicated. Just Ask, Repeat, Talk. Doing those three things will help you get more out of all your interactions with your healthcare team.

Kelly, Narrator: A new diagnosis can make you feel alone. Outside of just processing the change to your life, understanding everything that goes into your treatment can feel overwhelming.

Horizon By Your Side is a patient support program designed specifically for someone prescribed a Horizon medication. Our dedicated team is your partner, committed to providing non-medical, personalized support so you can start and continue treatment as your doctor recommends.

Once you are prescribed a Horizon medication, you will work with your doctor to be enrolled into Horizon By Your Side and get matched with a Patient Access Liaison, or PAL. Or in some cases, a clinical nurse educator – a CNE.

Lindsey (PAL) talking to Khash: … I’m available to help you as you need for anything that might come up. I’m basically your advocate, your cheerleader, your friend. I’m here to support you through the entire journey.

Khash: My primary care physician said, “We’re going to have a Patient Access Liaison get in contact with you to discuss it further with you, and tell you all the pluses, minuses and all that stuff. Lindsey, really took the time to explain it all to me, including the commitment it’s going to take on my side to get this done.

Kelly, Narrator: A PAL is your partner to support and champion you while accomplishing your treatment goals. Some of the ways your PAL can support you include:
- Learning about insurance coverage and the approval process
- Understanding potential costs or cost assistance options
- Sharing additional resources, connect to advocacy groups, or connect with others if interested

Roxie: I did work with the Patient Access Liaison, more commonly known as PALs, and she kept in touch with me. I was really worried about insurance and about out-of-pocket cost. Although I was willing to do whatever it took. She checked out my insurances and I am so blessed because it was 100% covered.

Randi: They assigned me a Patient Access Liaison after I was approved for treatment and just helped guide me through the process as far as what to expect, the process that I was going to go through and just to be there for general support for me.

Melanie: She really took the time to explain everything and go through it and has been there for me for every single question ever since.

Kelly, Narrator: With everything you and your caregivers have going on, it can be difficult to fit treatment into your routine. Your PAL can help you understand what to expect at the start of treatment, how treatment can fit into your routine and send reminders to help you stay on track.

Carol (PAL): I want them to understand that I will be a point person for them. First and foremost, I’m there to listen and also let them know I’m there to support them through the process. And ultimately to empower them.

Latoya: They remind you of things that you typically forget. Even like when it comes to testing kits, you know. I was able to work out a plan. The PAL also will also make sure, like when it’s time to renew insurance, that at the end of the year you know, they shoot you a text messages to call. So I think they’re a great resource. They really are.

Melanie: They call me to do refills earlier than I need them so that I don’t run out of the medication.

Carol (PAL): We don’t want patients to feel that they’re just out there alone and floating in the space of the unknown. They can reach out to us at any time. We’re always available to them.

Kelly, Narrator: The Horizon By Your Side team can also help you become more comfortable with your diagnosis, even visiting to teach you hands-on how to take your medication and help you find medicine in case of an emergency.

Jerry (CNE): As a Clinical Nurse Educator my responsibility and my job is to make sure that our patients are well taken care of and that their needs are met. We also have communication with their primary doctors to make sure that they know and they are up-to-date in their treatment.

Shannon (CNE): I teach them about lifestyle modifications needed to stay healthy, a lot of disease state education.

Kelly, Narrator: We can also help connect you with a peer mentor, who are other Horizon patients that are going through a similar experience.

Randi: I may talk to three or four newly diagnosed patients a week. They want to know what the experience was like for me.

Kelly, Narrator: Horizon By Your Side also has many other resources available to patients and caregivers through our website, HorizonByYourSide.com. There you’ll find information about enrollment, treatment cost assistance options, treatment planning, and many other resources to assist you during your treatment experience.

In the end, Horizon By Your Side is designed to be just that …. by your side.

Melanie: I was so happy because I was so scared. She was there from the very beginning, I am trying to manage this disease by myself, but I’m not really by myself because I have these people in my corner that are available to me at any time.

Roxanne: After being so dismissed and feeling like I was doing this by myself, it was so helpful to have somebody who understood, who knew it. It gave me hope and it let me know that at some point, I was going to be able to go on with my life and not be held back by this anymore.

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Goal setting is part of what we do every day. We set goals for our days, our careers, our health, and our lives in general. This session will help you learn ways to achieve the goals that matter to you.

Imagine throwing a dart without a target. Where would you aim? Attempting to make a change in our lives without a clear goal is like throwing a dart without a target. It’s very difficult to stay motivated on change unless a goal is focusing our efforts.

By setting a goal, we give ourselves a target to shoot for... and a reason to keep going.

Like so many things in life, there are skills we can learn to increase the chances of achieving our goals.

You can actually use the letters in the word GOALS to help you remember them. We will now look at each of these skills in detail.

‘G’ Stands for Grit.

Now and then, we all face challenges that make us feel limited on what we can achieve.

We may take a few steps and then change direction because it seems impossible. Yet to accomplish goals, especially long-term goals, we must stick with it even when things are hard.

Grit means having the courage to put one foot in front of the other. To fall nine times but get up 10 times! People who have grit practice more than others. However, they don’t just do the same thing over and over again. Instead, they practice the areas they’re weak in. This can often be painful and hard. After all, doing something that you’re not good at can be tiring.

You can build grit by adopting a habit of daily practice, learning as you go and, and most importantly, moving through the challenging parts.

Sometimes it can even help to say out loud, “This is so frustrating because I’m challenging myself.”

‘O’ Stands for Outcome.

What is the specific outcome you want? This is more than the goal itself. IT’S WHAT YOU HOPE THAT GOAL GETS YOU. For example, a goal to take your medication everyday as prescribed could result in an outcome of having more freedom and less symptoms that get in the way.

A common mistake when setting a goal is to only think about how great life will be after accomplishing it without considering what is currently holding us back.

A helpful skill is to think of the outcome you want and create a plan that will get you through any challenges that stand in your way.

‘A’ Stands for Achievable.

Think about the skills or abilities that are needed to achieve your goal. How can you make it practical and within reach? For example, reading one book per month is probably achievable. Becoming a professional NBA player may not be... because you may not have the ability or skill to achieve that goal. You could set a goal to practice basketball one hour per day, though!

You could set a goal to practice basketball one hour per day, though!

How will you know your plan is working? What are the things you (or others) could see that will let you know you are closer to achieving your goal?

Think of the way your smartphone tracks your steps and how you can compare the steps you took today to yesterday’s. You can compare week to week, or even month to month. Is it something within your control? Is it realistic? What is the time frame you are wanting to achieve this goal in?

Rather than just thinking “I want to be healthy,” think of how you can frame it in a way that is time bound and within your control. For example, “Starting on Monday, after work, I will begin exercising 20 minutes a day, three times per week.”

A specific question you can ask to determine if your goals are achievable is to fill in the blank: I will know my plan is working if “blank.” What are the specific indicators that show you, and others ,that you are closer to reaching your goal?

‘L’ Stands for Link.

Think again about the goal you want to achieve. Now think of something you really like to do that you could bundle with that goal. Perhaps it’s scrolling through social media posts, playing a game on your phone, or watching Netflix. Linking steps toward your goal with something you like is a way of doing what you want to do AND what you should be doing to achieve a specific goal.

The trick is that you must do the two things together. One shouldn’t happen without the other. Unlike doing something fun as a reward AFTER completing a task you’re not so fond of, this behavioral practice ties together something you like with completing necessary tasks.

So how does it work? If your goal is to spend an hour a day organizing and doing household chores so your weekends can be more relaxing.

You might bundle a not so fun task like laundry with watching your favorite Netflix show. Or maybe you’re trying to finish a paper and you decide to bundle this not so fun task with...a fancy coffee drink.

But there’s one important catch. In order to stick to the plan and make this work, you have to have some self-control. If you reward yourself without doing what you should be doing, such as watching Netflix without doing laundry, the system will begin to fall apart.

‘S’ Stands for Steps.

Larger goals can be broken down into smaller goals. Small steps together equal a giant leap. The trick is to break goals down into the smallest, most manageable steps you can.

Think about someone who wants to go on a long run but is out of shape. While it may be tempting to want to start on the run and simply see how far you can go, it can be more helpful to start small and track your progress.

Perhaps start by getting running shoes. Another step may be running around the block after dinner. Then you might build up to running around the block two times the next day and three times the next. This allows you to check off each goal along the way, which can keep you motivated. You can also reflect on where you’ve been by documenting your progress and sharing with friends or family.

So, to recap, here are the easy-to-remember skills in G.O.A.L.S.:

  • Grit
  • Outcome
  • Achievable
  • Link, and
  • Steps

And using them is how to achieve the goals that matter to you.

Leer la Transcripción

English: Today, we will be talking about ways you can take charge of your health…

SPANISH: Hoy vamos a hablar cómo puede hacerse cargo y tomar control de su salud.

English: Specifically, three skills to help you better understand information you get from your doctor. These are three simple skills or tips you can use at your next doctor's appointment.

SPANISH: Específicamente, hay tres maneras de entender mejor la información que reciba de su médico y usar estos tres pasos para tomar control de su salud. Son tres simples destrezas o trucos que puede usar en su próxima cita médica.

English: Ask, Repeat, Talk, are three skills to help you understand and act on the information your doctor gives you. Ask about the information you receive to make sure you understand. Repeat what you hear to make sure you know what to do. Talk with confidence and be specific so the doctor knows how you are doing and your needs.

SPANISH: Preguntar sobre la información que reciba para asegurase que entiende. Repetir lo que escuchó para asegurarse que sabe lo que tiene que hacer. Hablar con confianza, y ser específico para que el doctor sepa como está y qué es lo que necesita.

English: We will start with ‘ASK’. Learn to be curious. Ask questions. Asking questions is important to have good communication with your doctor. If you don't ask questions, they may think that you know the answer or that you don't want more information. Curiosity, wanting to know more, can help you better understand the information you receive. And asking, can help you collaborate, be a partner with your doctor; to work more actively with your doctor on how to take care of your health. If you have any doubts...... Ask, don't wait to be asked. Take charge of your health! Well, and what can I ask?

SPANISH: Comenzaremos con 'PREGUNTAR'. Aprenda a ser curioso. Haga preguntas. El preguntar es importante para tener una buena comunicación con su médico. Si no hace preguntas, ellos puedan pensar que usted sabe la contestación o que usted no quiere más información. La curiosidad, el querer saber más, le puede ayudar a mejor entender la información que recibe. Y el preguntar, le puede ayudar a colaborar con su médico; a trabajar más activamente con su doctor en cómo cuidar su salud. Si tiene alguna duda… Pregunte, no espere a que le pregunten. ¡Tome riendas en su salud! Bueno, ¿Y qué puedo preguntar?

English: There are three important questions that you should always remember to ask at any medical appointment: What do I have? What is my problem? What do I need to do?… and Why is it important for me to do this? If you have any doubts, or do not understand something, remember you can ask anything.

SPANISH: Hay tres preguntas importantes que siempre debe recordar hacer en cualquier cita médica: ¿Qué es lo que tengo? ¿Cuál es mi problema de salud? ¿Qué tengo que hacer?… y ¿Porqué es importante que haga lo que me dice? Si tiene alguna duda, o no entiende algo, recuerde que usted puede preguntar cualquier cosa.

English: Now, a great question is... “What if I ask, but still don’t understand? Then, tell your doctor.

SPANISH: Ahora, la gran pregunta…

¿Qué pasa si yo hago una pregunta y todavía no entiendo? Entonces, déjele saber a su doctor que todavía no entiende.

English: Let your healthcare team know if you still don’t understand what you need. You might say, “This is new to me. Will you please explain that to me one more time?” Don’t feel rushed or embarrassed if you don’t understand something. Ask your healthcare provider again. Studies show that people who understand their doctor's instructions and recommendations better make fewer mistakes when taking their medicines or preparing for a medical exam or procedure. So, do not stop asking! That's the first skill. Let's talk about the second one.

SPANISH: Si no entiende, hágaselo saber a su médico o a su equipo de salud Podría decir: "Esto es nuevo para mí. Por favor, explícamelo una vez más. ” o “¿Podría repetir la información? No se sienta apurado o avergonzado si no entiende algo. Pregunte de nuevo. Estudios demuestran que las personas que entienden mejor las instrucciones y recomendaciones de su médico, cometen menos errores al tomarse sus medicinas o al prepararse para algún examen o procedimiento médico. Así que ¡No deje de PREGUNTAR! Esa es la primera destreza. Veamos cuál es la segunda.

English: To take control of your health, the second skill we must remember is to REPEAT. Repeating is an opportunity for you to give your own understanding of what the healthcare team has explained to you or shown you. This idea could be applied to many things: a pharmacist telling you how to split a pill, a physical therapist showing you how to wear a brace, a doctor showing you how to monitor your blood sugar and other things that are told or shown to you that may be helpful to repeat.

SPANISH: Para tomar control de su salud, la segunda destreza que debemos recordar es REPETIR. Repetir es una oportunidad para ver si ha entendido lo que su médico le explicó. Porque al repetir tiene la oportunidad de explicarle a su doctor, en sus propias palabras, lo que ha entendido. Esta idea se puede aplicar a muchas cosas, por ejemplo: Cuando el farmacéutico le dice cómo partir una píldora o tableta en dos; cómo dividirla. Cuando el terapista físico, o fisioterapeuta, le enseña cómo ponerse o cómo usar un aparato ortopédico. Cuando el doctor le explica cómo medir y controlar su nivel de azúcar en la sangre. En fin, repetir es una destreza muy útil. Le ayuda a ver si ha entendido cualquier tipo de información que le expliquen, o que le enseñen.

English: When you repeat the information remember this tip: Use your own words rather than simply holding the doctor or nurse’s words in your memory and racing to say the exact same thing. Take a moment to think about it and then say it in the words that you would use if you were explaining it to a friend or family member. Now let's look at the third skill.

SPANISH: Cuando repita la información recuerde este detalle: Use sus propias palabras. No se apresure, ni trate de recordar o usar las mismas palabras del doctor o la enfermera. Tome un momento para pensarlo y luego, repita la información como si le estuviera explicando a un amigo o a un familiar. Ahora veamos la tercera destreza.

English: Let’s look at using the third skill – TALK. Many of us hold back when we talk to our doctors or nurses; we dare not speak. Sometimes, we don’t know what information to share. You may feel pressured if your healthcare team seems rushed or if you feel they are not listening to you. Use simple words to express yourself and get your message across. Don't be afraid to express yourself, to say what you feel or are worried about. Express yourself and share information that will help your healthcare team guide your care and help you work better with them. Expressing yourself will help you to be heard, and make sure your needs are met. Expressing yourself , sharing, will also help you remember information, and give you more control over your health. Let's see how we can express ourselves.

SPANISH: Hablemos de la tercera destreza – Conversar. A muchos de nosotros nos sucede que cuando hablamos con nuestro médico, nos contenemos, nos restringimos; no nos atrevemos hablar. A veces, no sabemos qué información compartir. Tal vez nos sentimos apresurados, pensamos que el doctor está ocupado y no tiene tiempo de escucharnos. Use palabras simples para expresarse y transmitir su mensaje. No tenga miedo de expresarse, de decir lo que siente o le preocupa. Compartir información, le ayudará a que pueda relacionarse mejor, a trabajar mejor, con su médico o equipo de salud. Expresarse le ayudará a que le escuchen … y que se satisfagan o se resuelvan sus necesidades médicas. Y también, el compartir, el expresarse, le ayudará a poder recordar información más fácilmente. Sobretodo, podrá lograr un mejor control sobre su salud. Veamos cómo podemos expresarnos.

English: When sharing information with your doctor or healthcare team , it is useful to use “I” statements. “I” statements offer a way for you to let your doctor or healthcare team know if you feel rushed, confused, or threatened. Remember that it is important for your doctor to know how you’re feeling. The following are all examples of assertive “I” statement messages: “I need to ask some questions.” “I feel confused.” “I prepared for this appointment and want to show you some of the changes I’ve tracked.”

SPANISH: Al compartir información con su médico, es muy útil usar las afirmaciones o expresiones que comienzan con la palabra “yo”. Usando "yo" es una buena manera de decirle a su médico si se siente apurada, o confundida. Recuerde que es importante que su médico sepa cómo se siente. Aquí tenemos varios ejemplos de expresiones usando "Yo". “Yo necesito hacerle unas preguntas.” “Yo me siento confundida.” “Yo me preparé para esta cita/para esta consulta y aquí le muestro algunos de los cambios que he observado.”

English: In summary: Asking, Repeating, and Talking are three skills that will help you take control over your health. To help you understand and act on the information you receive from your doctor, remember these three steps: Ask about the information you receive to make sure you understand. Repeat what you hear or receive, to make sure you know what to do. And Talk – speak with confidence, express what you are feeling and be specific so that the doctor understands how you are doing and what are your needs. We hope this information will help you in any doctor’s appointment and help in taking charge of your health.

SPANISH: En resumen: Preguntar, Repetir, y Conversar son las tres destrezas que le ayudarán a tomar el control sobre su salud. Para entender y poner en práctica la información que reciba de su médico, recuerde los tres pasos: Preguntar sobre la información que reciba para asegurase que entiende. Repetir lo que oye o recibe, para asegurarse que sabe lo que tiene que hacer. Y Conversar - hablar con confianza, expresar lo que siente y ser específico para que el doctor sepa cómo está y qué es lo que necesita. Esperamos que esto le ayude en cualquier cita médica y así logre un mejor control sobre su salud.

English: Thank you!

SPANISH: ¡Gracias!

Leer la Transcripción

English: Improving Communication with Your Doctor

Spanish: Cómo mejorar la comunicación con su médico

English: Today we’ll talk about different communication styles and how to improve communication with your doctor or healthcare team.

Spanish: Hoy hablaremos sobre diferentes estilos de comunicación y cómo mejorar la comunicación con su médico o su equipo de profesionales de salud.

English: There are several communication styles. Let’s discuss the differences between passive, assertive/confident, and aggressive communication styles.

Spanish: Hay varios estilos de comunicación. Comparemos las diferencias entre comunicación pasiva, comunicación asertiva o llena de confianza, y estilos de comunicación agresivos.

English: Passive people are often afraid to speak up, speak softly, give in to others, and usually fail to express their feelings or needs. A passive communication style might sound like… “It really doesn’t matter that much” or “Okay, that’s fine.”

Spanish: En comunicación pasiva, las personas a menudo tienen miedo de hablar, hablan en voz baja, tienden a ceder a lo que dicen los demás, y por lo general no expresan sus sentimientos o necesidades. Un estilo de comunicación pasivo puede sonar como… "Realmente no tiene importancia", "OK, está bien”, "No pasa nada."

English: Assertive people express their wishes, questions, and needs in a clear and direct way so that other people — like your doctor are able to understand what it is they want and need.

Spanish: Las personas asertivas suelen expresar sus deseos, hacer preguntas, y expresar sus necesidades de forma clara y directa para que otras personas — como su médico, entiendan qué es lo que quieren y necesitan.

English: Aggressive people might disrespect the other person and deny them the chance to express their opinions. An aggressive communication style might sound like… “I’m right, and you’re wrong.”

Spanish: Las personas que se comunican de forma agresiva, podrían faltarle el respeto a la otra persona y les niegan la oportunidad de expresar sus opiniones. Un estilo de comunicación agresivo podría sonar cómo "Yo tengo razón, y tú estás equivocado.”

English: Assertiveness is not the same as aggression. Assertiveness is about self-respect and expressing your opinions, whereas aggression is about disrespecting the other person and denying them the chance to express their opinions. Assertive communication involves eye contact that demonstrates interest, a speaking voice at a level tone and knowing how, when, where, and what you choose to say.

Spanish: La asertividad no es lo mismo que la agresión. La asertividad se trata de respetarse a sí mismo y expresar tus opiniones, mientras que la agresión le falta el respeto a la otra persona y le niega la oportunidad de expresar sus opiniones. La comunicación asertiva implica el contacto visual, que demuestra interés por el otro, hablar en un tono de voz nivelado y el saber cómo, cuándo, dónde y qué elige a decir.

English: “I” statements offer a way for you to let your healthcare team know if you feel rushed, confused, or threatened. It is important for the healthcare team to know how you’re feeling. Speak assertively, using the formula: “I feel _____ when I ___ _ because ____". “I” statements are part of being confident in our communication. They don’t assign blame.

Spanish: Las afirmaciones o expresiones usando "yo”, son maneras de comunicarle a su equipo médico si se siente apurado, confundido o amenazado. Es importante que su equipo médico sepa cómo se siente. Hable asertivamente, usando la fórmula de “Yo me siento _ _ _ _ _ cuando _ _ _ _ porque ____." Las expresiones usando " yo " ayudan a hablar con seguridad y tener confianza en cómo nos comunicamos….. Y no culpan a nadie. Yo me siento… Yo creo que… Pienso que… Me parece… Vamos a ver dos ejemplos.

English: The following are two examples of assertive communication using the formula: “I feel _____ when ___ _ because ____," as a way of expressing how you feel, and speaking up when you feel that way, and why you feel that way. Let's look at the first example: “I feel frustrated when I ask a question on the portal and don’t get a reply because I am not sure whether I am supposed to take my next dose.” Another example: “I feel really happy when you take the time to answer my questions because I leave feeling clear on what I’m supposed to do.” Remember, it's OKAY for you to ask questions and tell your medical team what you need, for example... if you want your doctor or nurse to talk to you slower, clearer, louder, or to use simpler language.

Spanish: Aquí vemos dos ejemplos de comunicación asertiva usando la fórmula: “Yo me siento _ _ _ _ _ cuando _ _ _ _ porque ____", como una forma de expresar cómo se siente, y poder decir cuando se siente de esa manera, y por qué se siente de esa manera. Veamos el primer ejemplo: "Me siento frustrada / frustrado cuando hago una pregunta en el portal y no me responden porque no estoy segura/ seguro si me debo tomar mi próxima dosis.” Otro ejemplo: “Yo me siento realmente feliz/ muy contenta cuando usted toma el tiempo para responder a mis preguntas porque me voy, sabiendo claramente lo que debo hacer.” Recuerde, está bien que haga preguntas y le diga a su equipo médico lo que necesita, por ejemplo... si desea que su médico o enfermera le hable más despacio, más claro, más alto o que use un lenguaje más simple.

English: Being honest and detailed builds trust and allows you to give specific information that is helpful in guiding your healthcare experience. This allows you to state specific ways you are feeling, instead of using general descriptions like “I’m okay” or “I’m fine.” For example... “One thing that is different…” “This is embarrassing to talk about, but…” “This began on this date…” “It felt like this…” And... “I’m uncertain about this…”/p>

Spanish: Ser honesto y detallado genera confianza y le permite dar información específica que puede ayudar en su atención médica. Sea más específico al decir cómo se siente, en lugar de usar descripciones generales como "Estoy bien" o "No pasa nada.” Por ejemplo... "Una cosa que es diferente..." "Me avergüenza hablar de esto, pero..." "Esto comenzó en esta fecha..." “Me sentía así..." y... "No estoy segura de esto..."

English: In Summary… To improve communication with your doctor, Be assertive, Speak with confidence, and be honest and specific. Your doctor and healthcare team appreciate honest and detailed communication. Remember, they are here to help you.

Spanish: En Resumen… Para mejorar la comunicación con su médico, Sea asertivo, Hable con confianza, Sea honesto y especifico. Su médico y profesionales de la salud aprecian una comunicación sincera y detallada. Recuerde, ellos están para ayudarle.

English: Thank you!

Spanish: ¡Gracias!

VIDEOS AND RESOURCES

Resources to Support You Every Step of the Way

Find important tools to help you or a loved one on BUPHENYL® (sodium phenylbutyrate) Tablets or Powder.

Taking Charge of Your Health

Taking Charge of Your Health Is an A.R.T.

A resource to help you communicate with your healthcare team and use information to take charge of your health.

Making Changes That S.T.I.C.K.

A resource with real-life strategies to help you understand change and keep you motivated to stay on track.

How to Achieve G.O.A.L.S. That Matter to You

5 skills to help you meet your goals.

Spanish Videos

Tres maneras de hacerse cargo de su salud

Un recurso que lo ayuda a entender y a actuar de acuerdo con la información que le da su médico.

Mejorar la comunicación con su médico

Un recurso que lo ayuda a comunicarse con su equipo de atención médica.

USE and IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about BUPHENYL?

BUPHENYL may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of BUPHENYL, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking BUPHENYL:

  • sleepiness
  • weakness
  • lightheadedness
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • change in taste
  • problems with hearing
  • confusion
  • headache

What is BUPHENYL?

  • BUPHENYL® (sodium phenylbutyrate) Tablets is a prescription medicine that can be taken by mouth and BUPHENYL® (sodium phenylbutyrate) Powder is a prescription medicine that can be taken by mouth or feeding tube for the long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD).
  • BUPHENYL only treats high blood levels of ammonia in patients with carbamylphosphate synthetase (CPS), ornithine transcarbamylase (OTC) and argininosuccinic acid synthetase (AS) deficiencies.
  • BUPHENYL can be used in infants up to 28 days old who have a complete enzyme deficiency, and in patients 1 month of age and older who have a partial enzyme deficiency and have a history of brain damage from high blood levels of ammonia.
  • BUPHENYL must be used along with a low-protein diet and in some cases, dietary supplements.
  • BUPHENYL is not used to treat acute (severe) hyperammonemia, which is a medical emergency.

Do not take BUPHENYL if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience an allergic reaction while taking BUPHENYL.

Before taking BUPHENYL, tell your doctor about all of your medical conditions, including if you:

  • have heart failure or decreased kidney function, which may lead to retention of the sodium content of BUPHENYL with potentially serious consequences, such as worsening heart failure, high blood pressure, and swelling.
  • are pregnant or plan to become pregnant. It is not known if BUPHENYL will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if BUPHENYL passes into your breast milk. Breastfeeding is not recommended during treatment with BUPHENYL. Talk to your doctor about the best way to feed your baby if you take BUPHENYL.

What are possible side effects of BUPHENYL?

BUPHENYL may cause serious side effects, including:

  • See “What is the most important information I should know about BUPHENYL?”

The most common side effects of BUPHENYL include:

  • decreased appetite
  • body odor
  • bad taste
  • absent or irregular periods in women

These are not all of the possible side effects of BUPHENYL. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Patient Package Insert and discuss with your doctor.

USE and IMPORTANT SAFETY INFORMATION

What is the most important safety information I should know about BUPHENYL?

BUPHENYL may cause serious side effects, including:

Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of BUPHENYL, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking BUPHENYL:

  • sleepiness
  • weakness
  • lightheadedness
  • problems with memory
  • worsening of numbness, tingling, or burning in your hands or feet
  • change in taste
  • problems with hearing
  • confusion
  • headache

What is BUPHENYL?

  • BUPHENYL® (sodium phenylbutyrate) Tablets is a prescription medicine that can be taken by mouth and BUPHENYL® (sodium phenylbutyrate) Powder is a prescription medicine that can be taken by mouth or feeding tube for the long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD).
  • BUPHENYL only treats high blood levels of ammonia in patients with carbamylphosphate synthetase (CPS), ornithine transcarbamylase (OTC) and argininosuccinic acid synthetase (AS) deficiencies.
  • BUPHENYL can be used in infants up to 28 days old who have a complete enzyme deficiency, and in patients 1 month of age and older who have a partial enzyme deficiency and have a history of brain damage from high blood levels of ammonia.
  • BUPHENYL must be used along with a low-protein diet and in some cases, dietary supplements.
  • BUPHENYL is not used to treat acute (severe) hyperammonemia, which is a medical emergency.

Do not take BUPHENYL if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you experience an allergic reaction while taking BUPHENYL.

Before taking BUPHENYL, tell your doctor about all of your medical conditions, including if you:

  • have heart failure or decreased kidney function, which may lead to retention of the sodium content of BUPHENYL with potentially serious consequences, such as worsening heart failure, high blood pressure, and swelling.
  • are pregnant or plan to become pregnant. It is not known if BUPHENYL will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if BUPHENYL passes into your breast milk. Breastfeeding is not recommended during treatment with BUPHENYL. Talk to your doctor about the best way to feed your baby if you take BUPHENYL.

What are possible side effects of BUPHENYL?

BUPHENYL may cause serious side effects, including:

  • See “What is the most important information I should know about BUPHENYL?”

The most common side effects of BUPHENYL include:

  • decreased appetite
  • body odor
  • bad taste
  • absent or irregular periods in women

These are not all of the possible side effects of BUPHENYL. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For additional Important Safety Information, click here for the Patient Package Insert and discuss with your doctor.